Raising a kid with multiple sclerosis takes patience, knowledge, and a big dose of optimism. Here's how one mom does it.

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Megan Lafferty was a bright, talented high school athlete
who competes in cross country track and field, basketball, and softball. She’s was at the top of her class, a rising senior heading for college one day. She also
has multiple sclerosis.

MS is only part of the total picture of Megan, said her
mother, Leigh Lafferty, of Penn Yan, N.Y.. Now a skilled MS
caregiver, Lafferty gets on a roll when she’s talking about Megan,
the oldest of three siblings in the house. “I sound like I’m bragging,” she
acknowledged. “And I am.”

She has a lot to brag about. Megan was ranked at the top
of her junior year class academically. Like a lot of teens, “she thinks she’s
invincible,” said Lafferty.

That youthful optimism is a buffer for anxiety about what
could happen with her multiple sclerosis. Lafferty does the worrying at times,
despite her generally positive outlook, because she also knows what troubles
the future might hold.

When Megan received her MS
diagnosis at age 11, Lafferty quickly joined the ranks
of MS caretakers. “You wish it was you with the diagnosis, not your child,” she
recalled. One of the challenges of MS is that its course is unpredictable and
varies so widely among individuals. It can also be a scary disease, depending
on your previous beliefs or experiences with MS.

“One doctor told us, 'You’re not going to die from it.
It’s more like a chronic illness you will learn to live with,'” she said. With
that in mind, as well as receiving care from neurologists at the nearby Pediatric
MS Center of Excellence at the Jacobs Neurological Institute clinic based in
the Women & Children’s Hospital in Buffalo, she was better able to handle
her daughter's illness.

It also helped that Lafferty is a nurse practitioner,
which she said gave her an advantage in responding to Megan’s diagnosis. “I had
a lot of knowledge and people I could turn to, to ask for information,” she said.
The weekly and then daily shots Megan needed to manage her MS symptoms were
less intimidating for Lafferty to give than they might have been for moms
without medical training.

Lafferty acknowledged that there are still challenges to
parenting a teen with MS. One is that
sometimes Megan is tired, and Lafferty can't always tell if the fatigue
is due to MS or to her daughter’s typical frenetic teen schedule. But at the
same time, she enjoys the fact that her daughter is living her teen life to the
fullest.

How
Parents Can Cope

A lack of information about multiple sclerosis,
particularly in kids, can create a lot of anxiety and self-doubt for parents. According
to a study published in the January 2013 issue of the Journal of Neurological
Sciences, not having enough information about their role as caregivers, parents
of children with MS were less satisfied as a couple and lack of knowledge had
an impact on the function of the family.

It’s important that you understand multiple sclerosis in
your child and how to manage the prescribed medical regimen. Then consider
these next steps:

Tell
friends and family only if and when you're ready.
It’s fine to be selective, said Mary
Karpinski, LMSW, a medical social worker at the Jacobs Neurological Institute. If
disclosing too soon causes more stress, it’s not worth it, because stress can
lead to exacerbation.

Build
a support network. Network online, reach out
through national organizations such as the National Multiple Sclerosis Society,
or take advantage of events that might be offered through your child's MS
center. For instance, the staff at Jacobs Neurological Institute organizes
family weekends that allow patients to meet other families and create ongoing
networks.

Have
fun as a family. Lafferty noted that her
family has been able to go to special events, such as baseball games, as part
of the Institute’s programming for families. These are excellent ways to
reinforce family bonds and keep MS from dominating family life.

Work
with your child's school. Lafferty said she had few problems
working with school administrators to get Megan the accommodations she needs,
such as extended time on tests to compensate for fatigue or memory difficulties.
Karpinski pointed out that some children might need more accommodations because
of other cognitive changes, mobility problems, changes in vision, and heat
sensitivity. Don't be afraid to ask.

Encourage
independence. Moms tend to take over and run
the medication regimen, said Karpinski. But this isn’t always best in the long
run. Instead, teach your child how to manage MS on her own and encourage making
independent choices as much as possible.

Find
something else to fight over. “You’d much rather
that your child pierce their nose or dye their hair purple than stop taking
their medications,” pointed out Pat Daily, LCSW, director of counseling and support services at the
Rocky Mountain MS Center in Westminster, Colo. Yet the multiple
sclerosis care regimen can become part of the natural power struggle between
parents and older teens if you aren’t careful. Teach independence in self-care,
but try to shift the power struggles away from health whenever possible.

Fight
your overprotective urge. Lafferty encouraged Megan
to be active in sports and her social network. Some parents become overprotective and want to keep their children home and
quiet, but remember that physical
activity is actually good for multiple sclerosis, said Karpinski, and
children and teens with or without MS need to be active and engaged with their
peers.

Don’t
let MS define your child or you. MS
is not the whole sum of your child or your family. If you’re starting to feel
like there’s nothing in your life but MS, talk to a social worker or therapist who
can help you rebalance your life.

“I see a lot of young people with MS as they transition
into adulthood. They can have normal, successful, healthy lives, go to college,
have careers, and have families,” said Karpinski. “It’s one of the things that
parents worry about — 'will our child have the normal life I’ve
dreamed they will have?' They will.”

And then, like Lafferty, you to will be able to say, “I
sound like I’m bragging.” And you'll have every reason to.

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